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Back from the hospital, diagnosed with 3 fractured vertebrae (long)
Posted by: Grumpyguy
Date: May 17, 2019 07:43PM
Those that remember, I was diagnosed with an autoimmune disease called CIDP in December 2016. Treatment up to now has consisted of IViG and various levels of Prednisone, ranging from 20mg up to 60mg, daily.

Unfortunately, the C in CIDP stands for chronic and I've had a lot more downs than ups and as a result, the Prednisone would be upped to treat the downturns.

Unfortunately, long term Prednisone can weaken your bones, and ironically, my neurologist, in an effort to wean me off Prednisone, started me on Imuran 2 weeks ago. Imuran is supposed to suppress your immune system and thus stop it from attacking my nerve insulation.

-----------------------------

Around 3 or 4 weeks ago, I had a terribly sharp pain in my lower back. It was so bad, I went to my doctor.
He told me with all the steroids I was taking, it would probably heal itself soon enough. I wasn't really happy with that diagnosis and lack of help.

A week later, I woke up in bed with such horrible back spasms that I couldn't breathe when they hit. It took me 30 minutes to inch myself off the bed as every movement would cause a spasm and I couldn't breathe. I actually thought I might die right there. Then of course, all my muscles ached and were tired for days afterward.

Went back to the doctor. I don't think he believed me, but I insisted that he do something. He gave me a muscle relaxer and a few Vicadin.

So for the next few weeks, I didn't sleep in my bed, and instead would sleep in a recliner. My back still hurt, and lifting became harder and harder, but at least no spasms.

The problem is, I just don't sleep well in the recliner, so on Monday, sleep deprived, I tried sleeping in my bed. That was a mistake.

When I woke up, my back went into those horrible spasms. They hit so hard, that once again I couldn't breathe. Once again, I had to inch myself out of bed between spasms. I went to work, but my muscles were so weak from the spasms, I could barely walk.

I called my doctor again, but he said I needed to see a specialist, a rheumatoid specialist. Thanks, Doc! Nothing for the pain or the spasms. Not a damn thing to address my distress.
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By Wednesday, my back felt worse, and I could barely walk and Thursday morning, I went to the ER out of desperation.

Of course to get a Catscan and an MRI, I had to lay flat. I told the staff what would happen. So twice I had to go through the terrible spasms that still took my breath away. At least, I guess they got to see my symptoms in all their glory.

Of course, I felt even worse after the spasm attacks. They didn't keep me, but instead sent me home with pain pills. Got the results today, there is one fractured vertebrae that looks to be about a year old and 50% healed. There is another fracture, that is about 6 months and just starting to heal, and a brand new one, which is 50% collapsed. A Dexascan showed my bone density has in fact decreased.

Apparently, the newest fracture hits the right nerves to cause the spasms only when I lay flat.

I have a referral to see a spine surgeon next week.
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Here's the thing, even avoiding laying down and triggering the spasms, I'm in terrible pain. I'm using a cane to get out of chairs and to steady myself when walking. I've got enough pain pills to last the weekend if I only take one a day. And boy, do they make all the difference.

I definitely feel like I've been abandoned by my family doctor and the ER basically kicked me to the curb despite seeing me flop on my back with asphyxiating spasms, twice.
----------------------------------------------------

I called work and took a vacation next week to try to at least give my back some rest from lifting.

Thanks for reading, I just really needed to express my frustrations. Maybe the spine doc will be a bit more attentive and helpful, at least I hope so.



Bryan
______________________________________________________
Mac Mini 2.6 GHz, 16 GB ram High Sierra
MacBook Pro (Early 2008 model) 2.4 GHz, 4 GB ram, 200 GB hard drive/ Mac OS 10.9.1 and XP SP3
iPhone 7 iOS 11
Location: Cincinnati



Edited 1 time(s). Last edit at 05/17/2019 07:50PM by Grumpyguy.
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Re: Back from the hospital, diagnosed with 3 fractured vertebrae (long)
Posted by: decay
Date: May 17, 2019 08:48PM
That sounds brutal, I'm so sorry you're going through this.



---
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Re: Back from the hospital, diagnosed with 3 fractured vertebrae (long)
Posted by: Ammo
Date: May 17, 2019 09:38PM
That sounds awful - is there someone who could help you out for until you are feeling better?



Be kind, for everyone you meet is fighting a battle you know nothing about. —Wendy Mass
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Re: Back from the hospital, diagnosed with 3 fractured vertebrae (long)
Posted by: rgG
Date: May 17, 2019 09:54PM
So sorry to hear this. It must be very scary and frustrating.
I hope you get relief soon.





Roswell, GA (Atlanta suburb)
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Re: Back from the hospital, diagnosed with 3 fractured vertebrae (long)
Posted by: Speedy
Date: May 17, 2019 10:37PM
Damn.



Saint Cloud, Minnesota, where the weather is wonderful even when it isn't.
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Re: Back from the hospital, diagnosed with 3 fractured vertebrae (long)
Posted by: Blankity Blank
Date: May 17, 2019 11:46PM
That is seriously crap. I’m so sorry to hear what you’re going through. I’ve had some luck pleading my case to a hospital patient advocate. Maybe even one of those local news consumer advocates; somebody that can give you some leverage. Of course there’s no magic bullet that gets them 100% on your side.

Keep hanging tough. Maybe hook up with somebody you check in with at least once or twice a day so they know nothing’s happened. If you don’t have one already, I’d look into one of the medical alert devices. Some of the vendors can be tricky to deal with, but it beats the alternative. Good luck. I’ll be thinking of you.



Edited 1 time(s). Last edit at 05/17/2019 11:49PM by Blankity Blank.
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Re: Back from the hospital, diagnosed with 3 fractured vertebrae (long)
Posted by: RecipeForDisaster
Date: May 18, 2019 06:17AM
So sorry this is happening all around. In my experience, doctors can get frustrated when your illness "doesn't follow the manual", doesn't magically go away with Tylenol, etc. They might be a little guilty when they haven't helped you, too. Many times I've found no help in this sort of situation. I hope you find a great solution with the specialist!
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Re: Back from the hospital, diagnosed with 3 fractured vertebrae (long)
Posted by: samintx
Date: May 18, 2019 06:59AM
Oh, my....well best thoughts with you. I have back problems and will be hoping you can get your terrible problem solved. God Bless.
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Re: Back from the hospital, diagnosed with 3 fractured vertebrae (long)
Posted by: blooz
Date: May 18, 2019 07:33AM
Back problems are the worst. Hope you can get some relief soon.



And we should consider every day lost on which we have not danced at least once.
—Friedrich Nietzsche
Western Massachusetts
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Re: Back from the hospital, diagnosed with 3 fractured vertebrae (long)
Posted by: wave rider
Date: May 18, 2019 10:02AM
Good luck Grumpyguy, sorry for your travails. Hope you can find alternative treatment without such negative side effects.



=wr=
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Re: Back from the hospital, diagnosed with 3 fractured vertebrae (long)
Posted by: Grumpyguy
Date: May 18, 2019 10:12AM
I appreciate the kind words.



Bryan
______________________________________________________
Mac Mini 2.6 GHz, 16 GB ram High Sierra
MacBook Pro (Early 2008 model) 2.4 GHz, 4 GB ram, 200 GB hard drive/ Mac OS 10.9.1 and XP SP3
iPhone 7 iOS 11
Location: Cincinnati
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Re: Back from the hospital, diagnosed with 3 fractured vertebrae (long)
Posted by: lost in space
Date: May 18, 2019 12:19PM
Man, oh man. That sucks. Sounds like my experience with muscle spasms after a minor fall, which kept me in a hospital for over a week, often screaming in pain. It seemed like the job of each “specialist” was to do their thing then pass me on to someone else. The lowest person in the medical field, a PT assistant, was the only one who made a difference. None of the efforts of the people with the most degrees helped. I mention this because the person who can make your life better is out there.

Now, four years later, Botox injections every three months and CBD oil keep the spasms at bay. I hope you get the treatment you need soon.



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Re: Back from the hospital, diagnosed with 3 fractured vertebrae (long)
Posted by: Rick-o
Date: May 18, 2019 07:00PM
Ouch! Whenever I feel down with my modest health problems, a MR forumite reminds me that I'm not that bad off!

Seriously, I hope you get the medical attention you need to get back to a normal routine, without all that pain! Good luck!



Mr. Lahey: A lot of people, don’t know how to drink. They drink against the grain of the liquor. And when you drink against the grain of the liquor? You lose.

Randy: What the @#$%& are you talking about?



"After a time, you may find, that having is not so pleasing a thing after all, as wanting. It is not logical, but it is often true."

- Mr. Spock



“There is no greater calling than to serve your fellow men. There is no greater contribution than to help the weak. There is no greater satisfaction than to have done it well.”

- Walter Reuther
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Re: Back from the hospital, diagnosed with 3 fractured vertebrae (long)
Posted by: JoeM
Date: May 18, 2019 07:15PM
I’m so sorry to learn of your troubles. I was actually wincing reading your post as I went through similar pain and other issues 2 years ago due to torn ligaments and arthritis in several lumbar facet joints which still continue today. Hoping you can get some relief and some sleep soon along with some competent medical help that can provide some solutions for your problem.



JoeM
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